Although at least now there’s something to show for the PMR even if it is that my face, neck and shoulders seem to have inflated into a built in buoyancy aid 😩. Still I’m told how well I look 😡
It’s ridiculous but when I broke my neck and was in a full brace for months it was actually easier than this, cos at least everyone could see what was wrong. Anyway, the picture above seems appropriate
I have the same complaint. So many of my friends just don't get what this disease is all about. They seem to equate the muscle pain and fatigue accompanying this disease with the minor an occasional fatigue and muscle pain they might feel in day-to-day living and because of that they just don't get it. And to add insult to injury, so to speak, they constantly tell me how well I look. If there was only some way to transfer how I feel to them then they would have another opinion. So I fully sympathize with the dilemma of those who have a hidden disease that is not openly demonstrable.
Ever thus. I swing between "please don't ask, I'll only bore you" and the need to let them know how it is, so they understand. I think most people just feel so uncomfortable with the reality, they don't know how to react. They want to give you some comfort and hope, but they don't have the words. When they ask how I am, I'm grateful they care. When they don't, I'm glad they just see me as me and not a sick person. X
Sorry to hear of the outward effects on you, please be assured that despite the change in your appearance, you are still you. Nonetheless it must be disheartening to watch your appearance change as yet another part of your journey plays out.
I’m torn between wanting people to see me and treat me as “normal/well” just so they won’t make a big fuss over me. Sometimes when I disclose that I have PMR, I then have to go on to explain it and treatment. What really pi#*es me off is when they defiantly announce “Oh, I would NEVER go on prednisone!”.....as if they have any clue what it is like to live without pred while having PMR!!😡
Other times, when others just assume I’m ok and expect I should be able to do something, I want to sometimes scream that I have a chronic illness that prevents me from being 100%. I may take longer to get going, or have to limit how far I can walk, etc.
Interestingly, since folks around me found out I am waiting for a total knee replacement, they somehow have a better grasp of my limited abilities....probably because it is more common and straight forward regarding surgery and recovery.
Seems like we just can’t win sometimes regarding how others treat us. I’m just appreciative of those closest to me who have taken the time to look up PMR to better understand where I’m coming from. Their compassion is most welcome!!
I agree with all of that. I sometimes think wearing a plaster cast or massive bandages would help to get across the message of exactly how we feel. I try to take comfort from that saying "no wrinkles on a balloon" ie my face 🐷 but don't want to worry too much for now about the balloon deflating 🤨
I’m “lucky”!😏😏 I have to use wrist and hand braces (also feet ones - but no-one sees those of course) when I go out so I get quite a lot of sympathy, especially as I use a walker as well.
The daft thing is, a lot of the time the PMR pains are worse (on a day to day basis) than the arthritis.😀
Isn't that ironic! Poor you though. Ouch 😣
Have you had the , ," oh , but you look so well , your skin is positively glowing , wish I could get some of what you've got!" yet.
Or , " but didn't you have that months ago , haven't you sorted it out yet"
Or, " you just need to take better care of yourself , eat better and do the right exercise and you'll be alright."
Or , my absolute all time favourite, " well at least you haven't got this terrible .....( cold/ flu / rash / sprain/ bad back insert as required!) that blah!blah! has that's really bad."
Maintaining serenity is the key to my mental health these days .....and preventing a serious drop in my local population !😂😂😂
Indeed I don’t want sympathy, just understanding of my limitations and the me I am atm. I was always the doer, instigator, friend and Carer.
It’s the ‘Have you STILL got that Poly Thing?!?’
In fact my 84year old Aunt said that very thing to me yesterday on the phone, followed by a Very Audible Sigh of Annoyance! 🙄
As a lot of you know l’ve had Breast Cancer, a Mastectomy & Chemo in the middle of PMR but the times when l’ve been asked how I’m doing & have mentioned the long term side effects of Chemo, ie my knees ~ a very often said reply ~ ‘Well it’s a Small Price to Pay’ or worse still ~ ‘It’s Better than the Alternative!’
Why don't people just shut up when they have nothing useful to contribute? How on earth do they know what living with the sequelae of cancer and its treatment are like? Especially the discoveries made on the way as to the damage done and what it will mean in the future...
Well said .
Have you ever felt like saying in a confused voice ''Why ? what's the alternative '' See if they are so jovial then as you stare at them and wait for an answer .
Oh I’ve actually been tempted! 🤪
Like that idea!!
It is unbelievable isn't it.
I loved your description of the sigh of annoyance after they ask if you still have PMR , exactly , as though it's all our fault for not trying hard enough to get better.
I do get the comment of , ' How can you still be so calm and cheery about it , I'd go mad!' these days too.
I can't tell anyone the real reason for my serenity is that it had to be learnt to stop me screaming at people for their insensitivity.
In a way , I know I'm actually patronising the " normals" , my smile is like me giving them a little pat on the head as I say to myself ,
' oh poor dears , you really have no idea how stupid and insensitive you have just sounded , and I hope you never become so ill that you do.'
Accepting that you can't shake the stupid out of people and the ability to stop sweating the small stuff are at least some of the unexpected good things I will have earned from all this suffering.
Big Hugs , Bee xx
Thanks Bee xx
I love this quote , I printed it off in small size and made it into a badge !!
Take care , Bee x
That’s excellent!!!
Two answers to “but you don’t look ill” ... it’s not my face that’s ill,... you don’t look stupid. 😂
That made me laugh out loud! 😅😂🤣
Love It! 🤭
I think that answer among others behind my sweet smile and polite thank you 😋😁
There's always "It's a life-long illness. Are you suggesting I should drop dead...?"
My favourite two "Thought Insults " are,
' At least I haven't got the common illness of chronic stupidity , that's something you will never find a cure for!'
And I paraphrase Churchill with,
' Yes , I'm still ill , but in a few years I will be better , you , my dear , will still be stupid!'
Oh and an added bonus insult ,
' I only wish I was as insensitive as you then I might not feel how painful this is !'
😂😂😂😂😂
Start making more buttons...
Some of my t-shirt slogans are corkers too!
Perhaps I should start a side business😂😂😂😂
I did finally make the t-shirt with a cute sleeping red blood cell on it saying ,
' Even my blood is lazy!' I wore it to my last occupational therapy session. The kid with leukemia loved it !!!
You don't have to say the words out loud to enjoy the ultimate comeback.
In fact , it adds to the pleasure of the insult when you are the only one in on the joke.
Sometimes , I have a slight smirk on my face instead of a smile when someone walks away and my OH looks at me and giggles that he wishes he knew what I was actually thinking.
"A very cutting insult , and a good one!" is the reply.
Absolutely. 😂😂😂
☹️
You can edit your posts if you click on “more” at the bottom of your reply. It’ll give you options, one of which is “edit”. You can go back and make your changes and click “edit” again. Shame there isn’t an autocorrect the autocorrect feature.
It is. Unfortunately it was ever thus!
Just because you can’t see someone’s sick inside, doesn’t mean they aren’t.
Genuine friends and family - maybe you can explain, but they don’t really understand (only if you’ve been through it, do you) - as for casual acquaintances just nod politely (and mutter under your breath!).
Important thing is - we understand!
No point getting uptight about it!
I really hated not looking like me, I found it very depressing. I already had a round face but add swollen cheeks and neck yuck! Then my hair changed as well and it was like someone else in the mirror. I wasn't fond of how I looked before, but this just wasn't me.
Things have eased now I have got below 10mg but I still look forward to seeing me again.
I too find my appearance difficult to take sometimes. Hoping that as my dose lowers some andominal fat will go. I tell people that I live my life at 50 % but really most people don't care so I don't talk about it.
Yesterday I was asked if I was putting on ‘this feeling tired and being in pain thing’ because I declined to clear out the garage. It’s a job that’ll take a few days and involves lifting. Can’t do it, didn’t do it last year and may not this year. I said I wished I was putting it on because then it would go away and left the room. It took many slow breaths to calm down; angry, frustrated and hurt. I already feel like a fraud because it’s changed my life so much and so quickly, but isn’t considered serious because it can’t be seen. It certainly improves resilience😳
People don't say anything to me, but there is definitely an assumption I'll do everything I always have, plus manage our ongoing move without any help other than what I actually ask for. Which makes me feel I'm too demanding. I get help for a specific task when I ask, but I cannot keep on asking. It makes me feel guilty.
Oh my, I can so relate to your post. I have always done everything around our home, and over the last two years as tired and in pain as I have been my hubby still has to be given a list or told what to do. He would say well where is my list, I would say, I did not have the energy to make one. Also I always have to ask for help, rarely dose he or my grandson just come and start helping. And it does make you feel guilty and demanding. Why though, I think because we are women. No helping and making us ask does not seem to make my hubby or grandson feel guilty at all.
I need to build some more resistance, and resilience, but it hurts so much cos I know I wouldn’t be like that to someone in my position and some of the people I’ve extended yrs of understanding to don’t seem to be able to return it
It’s not easy Wraysbury. I know how I feel, I’ve never shirked or shammed in my life and I know and detest how this condition has affected my life. You know much the same. Anyone suffering will identify and understand the problem. I’m learning, with difficulty, to extend my boundaries and lower every expectation. I wish things were different, but I can’t fight what I can’t change. Hence building resilience.
This is a problem for most of us with PMR/GCA .l was quite shocked when l looked at a photograph taken of me about eighteen months ago .l was on a much higher dose of pred at the time and my face looked so rounded and bloated ,something l was not that aware of at the time.l am on a lower dose now but still have a slight swelling around my face but that is to my advantage now as it does make me look really well !l tried to explain to my son’s that l do not feel as well as l used to pre PMR,and that l am often feeling depressed about it,they said that l looked very well and was really doing well for my age.They were also mentioning that l may want to think about selling my home and building onto one of theirs ,l would love to do this because one of them is moving to a much nicer area,but my friends have advised me to think very carefully about that ! I am often asked to help out with things at my church and often given tasks involving a lot of thought and care,l usually manage to cope with them somehow because it is so difficult to explain that l feel too tired to take on any more than just looking after myself !
So true!! I remember someone on here ( sorry can’t remember who ) said when folk commented on how well she looked said ( either with a smile or not - I try to manage the smile !😬) that “yes but it’s not my face that’s ill! “ x
Sorry for the confusion, I'd PM'd Grants148, who I think is a Patricia also.
I've put on 5lbs in the last few weeks, I call it my winter plumage.
In the southern US when the church ladies want to insult someone they prefce it with “bless her hear, her mama never taught her proper manners, ” or “bless her heart she doesn’t know any better”. Or bless her heart you can’t fix stupid...
When they say how well I look I say you can look as well as me you just need to take large doses of steroids and it will get rid of your wrinkles too. Its like botox.! x
Meeting someone i had not seen for a while,oh you have put on a lot of weight since i saw you last!!!!!!!!! your face is very puffy grrrrrrrrr.Oh really cant say i noticed grrrrrrrr.Nice to see you really must go(before i say something rather rude) Could have cried but held my head up.xxx
A huge well done to you 🤗. I tend to use up valuable energy thinking about suitable replies for ages after this sort of thing instead of ignoring it.
Oh how I agree. I hate hate my fat face and double chin. Like you, I have people say that I look sooo well. I even had someone say that I should be glad because my wrinkles have filled out and I look younger!!! They don't mention that my hair and skin have become thin, and they are not suffering from insomnia like I do!!!
Well - I just hate it. Someone insisted on taking photos at my "retirement dinner" the other night - and really I just got so deflated when I saw them. I don't look like me at all!!! Yes I know there's worst things in the world!! But its like being taken over by some alien! Wouldn't mind only my husband wanted to take a photo before I left the house and I refused - then I get them stuck in my face when I come in to work! And no - I am not vain - in fact far from it - but to have changed so much because of a bloomin medication. Yes I know I wouldn't be able to move without it!! But could we not have "move" and our faces as we know them!!! ha
I have struggled with this over the last two years too. I have felt like I lost my identity. Who I am. Felt invisible. Also had problems feeling I shouldn’t complain as this is an illness that will hopefully pass at some stage. After a major flare in October after dropping from 7.5 to 7 mg after a fantastic summer holiday with family where I felt great even if I don’t look like myself. This illness is a beast to be sure. You are in good company. We know how you feel. Take care xx💐
Feeling more like me!
Have I told you lately...I hate PMR!
Well it looks like I'm here to stay!
I hate the cat!!
Feeling low about the way I look
